The Hoka Hey Motorcycle Challenge is a one-of-a-kind endurance ride that defies convention. With no hotels, freeways, or GPS allowed, participants embark on an unparalleled journey of self-reliance and adventure. Spanning thousands of miles through rugged terrains and remote landscapes, riders navigate solely by their wits and intuition.
More than just a test of endurance, the HHMC is a testament to the human spirit, pushing riders to their limits while raising awareness and funds for charitable causes. It's an experience like no other, forging bonds among participants and leaving a lasting impact on all who dare to ride.
The Cause
Sanfilippo Syndrome
Jobe, age 8,
MPS 3A
What is Sanfilippo Syndrome?
Sanfilippo Syndrome, also known as MPS III, is an ultra rare genetic disorder that affects children. It belongs to a group of diseases called mucopolysaccharidoses (MPS), which result from the body's inability to properly break down certain complex sugar molecules.
Children born with Sanfilippo Syndrome lack a specific enzyme needed to break down these sugars, leading to their accumulation in cells throughout the body. Over time, this buildup causes progressive damage to cells, tissues, and organs, particularly in the brain. There are four types of Sanfilippo, A, B, C, D. Each type has a varying severity level depending on the specific mutations each child has. These mutations will play a major role in the life expectancy of the child.
The Impact of Sanfilippo Syndrome:
Sanfilippo Syndrome affects every aspect of a child's life. Children with Sanfilippo typically experience developmental delays, loss of speech, hyperactivity, behavioral problems, and eventually severe neurological decline. Sadly, there is currently no cure for Sanfilippo Syndrome, and the prognosis is devastating. Life expectancy is currently mid to late teens for children with typically progressing Sanfilippo Syndrome. This can vary greatly with some losing their battle before they see 10yrs of age.
Team Sanfilippo
Click above to find out more
Agatha, Age 5
MPSIIIB
Emily Age 19
MPS3A
About Team Sanfilippo:
Team Sanfilippo comprises a devoted ensemble united by these shared objectives:
• Cherishing each moment: Team Sanfilippo orchestrates several large group gatherings annually, fostering moments of togetherness for parents and families facing similar challenges.
• Exploring FDA-approved medications for off-label use in alleviating symptoms, thereby enhancing quality of life.
• Advocating for equitable treatment from the FDA in the development and approval of clinical trials tailored for the Sanfilippo community.
• Providing comprehensive support to families navigating various quality of life issues.
• Spearheading research efforts and aiding in the funding of promising treatment avenues, with the ultimate aim of discovering a cure.
At the heart of Team Sanfilippo is a deep sense of community and solidarity. Families affected by Sanfilippo syndrome find strength and support in connecting with others who understand their journey. Through fundraising events, awareness campaigns, and advocacy efforts,
Team Sanfilippo is more than just an organization; it's a movement fueled by hope, resilience, and determination. Every member, volunteer, and supporter plays a vital role in advancing the mission to conquer Sanfilippo syndrome and improve the lives of those affected by it. Together, as a unified force, Team Sanfilippo is paving the way toward a brighter future for individuals and families impacted by this ultra rare disease.
Why I chose to join the Team
Sean (left, 6),
AJ (right, 9)
Both MPS 3B
Kiernan, age 9, type B
Jonah, Age 16 MPS IIIB
Why I decided to align with Team Sanfilippo:
I have spent almost a year searching for the right cause to support, without really knowing what I wanted and trusting that I would just know when I found it. All I knew is that I needed to really believe in the cause, and that very belief is what I will cling to in the middle of the HHMC challenge when I'm really struggling with an exhausted mind and body.
In researching Sanfilippo Syndrome, searching for research facilities and learning about treatments and clinical trials, joining various social media support pages, and reaching out to organizations and individual families, I felt I was on the right track with seeking a meaningful connection. From my first conversation with someone from Team Sanfilippo that good feeling grew. After a few more conversations, I was confident that I had landed in the right spot. Team Sanfilippo felt like home, like a family rather than a business.
I wasn't directed to speak with a marketing person hired to persuade me to send then a check, unable to answer any questions I asked about current clinical trials. I wasn't met with a closed door when asking about potential connections with the very kids who I feel will bring me strength to continue on my challenge. I will be fighting for these beautiful children through severe sleep deprivation, exhaustion, extreme weather, all while continuously and endlessly getting lost, questioning why I decided to put myself in that position. Instead, I had multiple conversations with mothers who just want their kids to have the best life possible for whatever time they are given. These are strong and tired families who want to create happy memories. I feel privileged to help them in their quest.
I am honored to have the opportunity to participate in the 2024 Hoka Hey Motorcycle challenge partnering with Team Sanfilippo, and the amazing children they represent who fight for their lives every second of the day. My goal is to raise awareness and help relieve some of the financial burden so the families that will be supported through your generous donations can focus less on fundraising for a cure and more time relishing in the moments they are given.
 447710005_3203288186470131_4683613386950792183_n |  Kisses for Claire_edited |  445234282_1162704881534977_4181080763681336415_n |
|---|---|---|
 445227036_1162702328201899_8535020075302795004_n |  444489114_1162705578201574_5786400986463006481_n |  445359414_1162705164868282_8228834471083066126_n |
 447840120_1162704741534991_7336596518977994742_n_edited |  447779698_10233372120068631_7540420249749157931_n |  447780449_10233372122228685_505118916627727009_n_edited |
 447634533_1955145631609634_5583911069031886670_n |  Tyler Langan 19 mps III A_edited |  Parker, 11, MPSIIIA |
 447281545_1920209045079811_8170528492018717585_n_edited |  447620236_1955146331609564_2976892105762133246_n |
 447779792_10228839146941347_2974657221833240210_n |  447631472_3778592352369125_8019265751553479993_n |  447962612_10228839147861370_709790518767782253_n |
|---|---|---|
 Andreas 20 type 3b |  Jared 19 3b |  Steven 50 xxx |
 447962908_10169261915765436_4136374989370253679_n |  Hollie |  Oliver, 8 MPSIIIA |
 Khola, MPSIIIC 11 |  Ricky, 14, type A |  Kaitlyn, MPS3A 20_edited |
 Mya, 15, MPS IIIB with attenuated gene |  Jordan MPSIIIA, 29 |
In Memory
